What in the Word

I have been inspired by @Bobbi’s post on the semantics of the phrase Stroke Warrior and what nomenclature we assign to ourselves, if any, to air my own thoughts on this topic.

This post, however, is about the use of recovery to define post stroke life going forwards. Recovery, for me post stroke, always seemed redundant, it assumed that I would return to the same state of being I had prior to six TIAs and a stroke. I don’t think I will ever return to that state of being, even just the fact of having had a stroke has affected who I am now, and the aftershock, regardless of the symptoms, is an irreplaceable part of my life journey. So, recovery didn’t sit well with me. I used, instead, the term rebuilding but now that doesn’t seem quite befitting. Rebuilding alludes to some sort of completion at the end of it all, and I know that I will never be a complete idyll, even had I not suffered a stroke. I think rebuilding is suitable for the brick and mortar of life; driving a car, being able to walk again, returning to work, &c. I don’t think it applies well to the psychological pilgrimage undertaken after being struck. I know that the windmill of my mind that I have attempted to rebuild has turned out, architecturally, to be more akin to a structure drawn by Dr Seuss than by anything designed by Walter Gropius. Of course, this is all just prattling from my own logical view of things. I now like to think that I am rewiring because it feels the most pragmatic and fit for purpose when I consider the idea of recovery or rebuilding. As with my use of the phrase brain damage, it all seems to come down to necessitating or encouraging alternative pathways to compensate the pathways that have now been obstructed. I find myself a cognitive mad scientist, a Victor Frankenstein, yanking levers and punching buttons, in order to spark a current that will bring a new pathway to life, and when even the most subtle evidence of that is apparent, I clasp my hands and howl with maniacal laughter.

So, in a sense, I am a brain technician, an amateur one at that. I am a bit of a logophile, I enjoy thinking about language and its uses, it’s all grist for the mill. When I apply a term like rewiring, as opposed to recovery or rebuilding, I tend to have a clearer view in my head of what I am doing. I dismissed the term recovery early on after stroke, and found that, in doing so, it meant that three years on without having recovered doesn’t bother me as much as it would have had I thought I would, down the line, have regained what I had prior to stroke.

Addendum: I have to tag onto the end of this post, the best phrase I have heard yet, from @EmeraldEyes, which is Stroke Sparky.


Well Rups,

The stroke doesn’t care what we call it. Maybe we do care, but it won’t change the stroke. Perhaps it will give us comfort and strength to deal with things, and that in turn will help our mind & bodies of course? I’m all for finding the best mood to optimize our repair. That’s key, especially at this moment, since I am low on morale these last 3 days.

Ciao, Roland


I think we all experience highs and lows, the in betweens too. If things are going along swingingly then it cannot last, but that is true about the blues too.

Sharing it all makes it more bearable and I feel we are here for that purpose if not for any other. I agree that it can be hard to latch onto something positive at times, but that is a good time to look outside yourself. Could be something out there worth discovering.

Perhaps I am very wrong and should be striving every day in every way to be better and betterer (new word just invented by self) at stroke, but I prefer to place more importance on life than I do on stroke.

The stroke has made enough noise in my life, it is time it calmed down a little and let me pay attention, instead, to life itself.

I feel that it is life that deserves the attention. If nothing else life won out over stroke and for that reason alone I prefer to back the winner.

Really, stroke needs, despite how important it thinks it is, to back off and let the winner, life, take over.

As far as I’m concerned I am far happier with life at the centre of my attention.

I am not and have never been keen on labels. They can easily turn into restraints and blinkers. Let’s get it all out into daylight. Take a look at the bigger picture, try not to obsess about self.

I know adversity can set you back but trying to put distance between you and it is the best answer, I think.

Yeh, I do know that this is a stroke forum. I just like to wander off topic is all.

keep on keepin’ on


I doubt sharing that I wanted to end my life all weekend (making plans) and coming close, at least twice, would help anyone. I lost a lot of hope, because of increased hyper-tone, stiffness, drop foot (or forces that act on my foot). Now, I expect that doesn’t sound too bad, only it does wreck havoc with my morale, plus it would be most unhelpful to people struggling to find inspiration or some sort of inner peace. So I’d better not dwell on it.

Right now I feel like Job, who had everything taken from him,
ciao, Roland


Sorry to hear you have come close to crashing this weekend Roland, it is not a pleasant headspace to be in. I have been there myself, so know a little how it feels to reach rock bottom. I won’t dive into a rebuttal on my views of language and the brain, as the lens you might see it through on low morale may colour your response. I do hope that you may find some resources to becalm your spirit. Some peace of mind that will allow you to reboot your sense of self. On an encouraging note, your posts on Chinese medicine has inspired me to investigate Chinese herbs to help manage the osteoarthritis I have now developed in my neck, I have come across two herbs I want to hunt down, Du-zhong and Xu-duan. Everyday, I have a little tonic, this tonic is made up of gunpowder green tea, dried lemongrass and dried galangal. I like it cold, so I always brew it the night before and pop it in the fridge for the following day. It’s my form of spritzer and what I take to down my medication, and also gulp when I’m parched. I will add these new herbs to my tonic.


That’s good that you are embracing life affirmative thoughts Bobbi, and we all enjoy the effect that it has on us. Aye, I was going to mention that the theme of your response was just a little ironic due to being on the stroke forum. :laughing:


Hi Rups,

Yes it’s always an asset or at least hope in every new avenue we explore. I have always been attracted to Chinese medicine, dr, foods, Qigong and more… mainly because I have little faith in Western medicine. I hope these Chinese herbs you’re exploring prove useful.

I did indeed hit rock bottom. Not because of the pain (on Yin day my muscles are locked tight for 16 hours or more)… so I’m already dreading tomorrow. What’s on top of that is an eyelid that hurts affected side (unknown explanation) and a foot that is dropping and tensing up making walking very dangerous.

Maybe I have to just ride the storm. … which may last a week / month / year… who can tell ? No one, of course.

Anyway all the best for your neck ; I’ll ask my Chinese Dr. about your 2 herbs
I’m looking for a magic wand, and about to start the Asea molecule signalling supplement… last drop of hope for now, ciao, Roland


So you’re an “apprentice stroke sparky” :stuck_out_tongue_winking_eye:



I suppose I should be pleased with myself having become in a small way a source of inspiration.

It is always interesting to get a take on someone else’s view of the life we live and the way we react to it.

I agree that in itself can be a source of inspiration. Sobering of course to remember that there are both ups and downs to this existence.

keep on keepin’ on
:writing_hand: :smile: :heart:


@pando really sorry to hear you’ve had a tough weekend (probably on top of many tough days). It’s a tough place to be and i can’t offer any constructive advice as, thankfully, I’ve never been in that space. I hope you find a way through and if continuing to struggle you can find some help & support wherever is right for you.

I read a lot of your posts and can hear the struggles you face in them. None of know what others are experiencing as even the same thing is different for everyone.

I hope you find some inner peace soon.

Best wishes



@Rups its an interesting question which the answer is no doubt different for all.

Initially i was definitely in the recovery camp and strived for 100% back to pre stroke. Once i realised that 100% was unlikely I think I moved into an acceptance of my current reality with a bucket load of hope for much more recovery.

I don’t think of myself as a survivor, warrior, thriver or any other term. I think i’m with @Bobbi on labels. I see myself as Ann and whilst i’m not the Ann I was Ann is still very much there. I prefer not to let my stroke dominate my thoughts (not always easy) and try and live as best I can with the deficits I have. I still do my “rehab” but build it more into my activities rather than make it a specific thing.

I stopped looking for answers or trying to understand it all. For me it doesn’t help and probably lowers my mood more than i’d like it too.

Now i think i have waffled right off the topic of the original post so will shut up now :grin:

Best wishes



Thank you Ann,

I lost all hope over the weekend… and now slowly trying to find it again. My problems are easy to spell out, but difficult to bear. Firstly my spasticity / hyper-tone / stiffness has spread to my foot, which makes walking a risky business. Secondly, my infernal Yin / Yang days are tedious ; I have to endure 16 hours of locked leg muscles every other day. I’m already dreading tomorrow. Perhaps it’s like an injury / perhaps it’s increased overall spasticity? I thought things would improve for me at this stage, because I keep everything moving. Time will tell, obviously. My poor wife suffers seeing me suffer. I long for a settled life without pain.

Thanks for your kind support, it makes a difference,
ciao, Roland


I genuinely feel for you & wush I could provide some answers. I know you see your Chinese Dr but have you gone back to yoyr GP/stroke team? There may be something that they could offer.

Sending positive thoughts your way.

Take care.



This thread is growing faster than I can keep up with

What I want to say is that I am NOT on a recovery path. I don’t talk about it (except in laziness). I talk about capability development.

I too, like you @Rups am not aspiring to return to where I was.
Life moves on
…and stroke was a unexpected translation to a new landscape one one I accepted immediately ithappened
There are some shared aspects with the landscape I used to be on but what’s key is it’s a new chapter with it’s own rewards from it’s own challenges

I’ll have to return to read the rest of the previous. posts



@Rups…I really like the rewiring word, because that is both hopeful, and continues to happen for me, albiet, not without setbacks from time to time.

I suspect I have watched you, as I have experienced myself, now @Pando, and many others here struggle with the emotional aspects of our experience. We are very strong people, but even very strong people have lapses in strength from time to time. Or maybe those lapses are actually just pleas for help or change to make it easier, but actually show we are even stronger in those times for not succumbing to the temptations of leaving the situation completely.

I don’t know how clear I have been, but this in particular was what I needed you all for. To help me keep the strength and not give in. It isn’t easy for any of us. Much love to all.


It seems there are some whose lack of strength exceeds my imagination - I think things must be very glum for them - so yes it seems we/ I am stronger than I imagined because I didn’t see the range or where on that scale I am currently sitting

I had a very very long profiling session yesterday with an Oxford university neuroscience researcher

One of the questionnaires sought to benchmark where I currently am on mood (the whole study is about how doing something rewarding from goal setting to planning to action to celebration improves mood - they assert that it does and now want to find strategies that might be better than others)

What surprised me was that the starting point was to be so full of ‘depressed funk’ that getting out of bed in 24 hours was driven purely by the need to use the bathroom… !

Part of the context for that was that a bad mood, one lacking in motivation set it motion a reinforcing
vicious circle hand and taking action toward a goal broke that cycle and could lead to a virtuous circle of achievement creates motivation to achieve

~ ~ ~
That I think is a slight segway to my view that there is a distinction between the forum and the community. One is the roads and infrastructure that facilitate the achievement of culture.

Our culture is rich in empathy but lacks the qualities to detect and ?rescue¿/ support forum members who are more in the vicious than virtuous circle cycle. Maybe your “we are strong” reflects being a community member.

I’m reminded of the advice that says “if you want to go fast go alone if you want to go far going company”


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I think you understood me very well @SimonInEdinburgh , and I agree with the neuroscience. All those things do help, but if one has been working toward a goal, not seeing enough improvement for some time, perhaps it isn’t time to give up, but to take a rest and conquer something else for awhile.? In my own case, perhaps I should leave the mental work to rest a bit, and pick back up on the physical for awhile, which has gone downhill. I don’t have enough energy for both, so have been trying to alternate days, when I remember or don’t have a pressing issue to deal with mentally (bills, taxes, replacing refrigerators, figuring out how to get the plumbing fixed, etc…)

And absolutely, the community, this one in particular, helps me combat the emotional downs. The infrastructure is very important, but the culture is priceless.

@pando…I am thinking of you, and of how hard you work physically. I know the pain is fierce and it is definitely a downer when progress slows or takes a step or two backward. Perhaps a ‘break’ to just relax? I know you just returned from a trip, but even a vacation can really wear anyone down, I expect especially us.


Yes, but then I start to get lazy. What I’m doing now is a winding down phase. Parts of me were too tense and need taking care of (my foot). Anyway, I don’t work like crazy, I’m much more relaxed now, which is really helping. My senior physio came and checked up on my foot yesterday which is slowly recovering. He said while normal people make thousands of movements, based on feedback from their sensory receptors, I am lacking in that feedback, due to low feedback. He thinks day to day life must incredibly difficult (true). The good news is that I have not got foot drop, it’s simply suffering from exhaustion, and incorrect muscle synergy (poor refinement due to limited sensation). He says my progress is excellent, and that I survived what he calls a horrific severity of stroke.

This is a daily routine I do, following Jeff Chand on YouTube

It takes around 8 minutes to complete
@Matthew1789 suggested Dragon Arms with Mingtong Gu, which I love, I wonder what dear Matthew will come up with next? Can’t wait !!

Ciao, ciao, Good Qi coming your way, Roland